Patients Know What Works
Often times when we are diagnosed with a rare disease, we have first been misdiagnosed with multiple other diseases. There are times when patients are put on so many different medicines, or given different therapies to see what works via process of elimination. Because it takes months to years at times when doctors finally figure out your diagnoses, we as patients know what works for us and what doesn't.
I know which methods work
There have been plenty of times that I've gone to the ER with certain symptoms and asked for specific medicines to be given because I've had those medications before and they worked to treat my ailment. For instance, back in 2012 when I first started getting sick and had uncontrollable vomiting, the only medication that worked was Phenergan, administered through an IV. I had been given other medications but they didn't work, but I feel like I'm not being listened to. When I ask doctors why they won't give me the medication that I know works for me, I get no answer.
Just please listen to me
If I'm in the ER sick, I don't have the strength to argue. Just please give me what I ask for. I even tell the doctors to take a look at my charts if they think I am not being honest. That seems to get my nowhere as well.
A situation that worked
It's the same situation when it comes to pain medicine. When I had my first surgery on my hip, I was given pain medicine via an IV for the first 24 hours. The next day I was given both oral pain medicine and IV medicines so my body could safely and comfortably be transitioned to only oral medications for discharge. The orthopedic doctor who performed my first surgeries helped everything go smoothly. I had a total hip replacement last summer with different doctor and at a different hospital.I had multiple meetings with this orthopedic surgeon. I explained to him how my pain is controlled, and he said he was okay with following what worked for my prior surgeries.
I thought we had an agreement
I explained that, if I am not weened off the IV drugs and onto oral medications, my pain will not be controlled. I explained that my body goes into shock; my blood pressure elevates, I start running a fever, and the pain is not controlled; in fact, it is worse. When I woke up from anesthesia I was immediately given oral pain medications and not the IV pain medications we'd discussed.
I was livid
I instantly got angry because, after the many meetings I had prior to surgery, not once did the surgeon say that he preferred to give me oral pain medication. If he had, I would have made the choice to find another surgeon. He was very rude about it when I addressed the issue. I had to fight to get the pain regimen that I had for past surgeries. I had to have patient relations come because he refused to give me what I knew would calm my pain. I was so upset, which was not helping with my recovery; it only added more stress.
Please, I don't want to fight
When patients are already sick we don't want to have to fight with the people that are supposed to nurse us back to health to get the medicine or treatment that we need to help us get better. We don't want to be in pain and stuck in the the hospital as it is.We're not coming to the hospital because we are drug addicts, especially when you can clearly see that we are in pain. When I go to the hospital and ask for specific medicines or treatment, it's because I know it works.
Don't believe me? Look at my chart
A couple of months ago I was admitted to the hospital through the ER. Every medicine I asked for the doctor kept questioning why I wanted it administered this way or why I wanted this medicine instead of a different one. It was so frustrating, and I finally asked the nurse to call the doctor to my room so I could speak directly to her myself. I suggested that the doctor look over my charts while she was in the room with me, which would clearly list what medicines I use so she wouldn't have to keep questioning me. She refused to look at my chart, instead opting to approve a one-time dose.
I told you something would happen
I've even been in the ICU and was given a nausea medication through my IV which I'd told the doctor I didn't want. I wanted what I always took. They persisted and insisted that I get the medication they wanted me to have. As soon as they pushed the medication through the IV, my face and eyes began to swell. Surprise! I was allergic to the medicine.
I know my body best
It really frustrates me when doctors think they know my body better than I do, and I am the one who has been through the fire to finally get the medications and treatments that work for me. A doctor that has been my care taker for all of an hour can't tell me differently.
Were you misdiagnosed, prior to being diagnosed with NMOSD?